Ylena Lucy Green desperately needs your help. Please donate today and help us raise £130,000 for life-saving surgery.
Ylena suffers from EDS (Ehlers-Danlos Syndrome), POTS (Postural Orthostatic Tachycardia) and Intestinal Failure (fed by TPN – a line going into her heart).
After three years of worsening symptoms, an ‘upright MRI’ revealed the cause of the extreme neck and back pain that has left her virtually bed-bound on a stack of pillows for the last six months.
The scans showed Ylena has EDS related Atlantoaxial Instability (AAI) and Cranio-cervical Instability (CCI). This means her neck painfully dislocates at the slightest movement. Left untreated it could lead to paralysis and even death. Specialist neurosurgery in Spain (or the US) is her only option and we urgently need to raise around £130,000.
Ylena from Haywards Heath, Sussex seemed healthy until, aged 12 the genetic condition EDS caused regular dislocations of her knees, wrists and hips. Dizzy spells, fatigue and nausea followed, getting steadily worse until she collapsed and was admitted to a children’s hospital. Unable to keep food down, she was fed through an NJ tube into her small intestine which was ineffective and painful, so Ylena was put on TPN.
Frequent ‘line infections’ finally settled down and with a motorized wheelchair, Ylena was able to go to college (aiming to be a doctor). However, since Feb ’17 Ylena’s needed constant nursing (by Mum). Moving is so painful she needs lifting into her wheelchair (by Dad), only ‘getting out’ for essential appointments.
Ylena tries to ‘put on a brave face’, even managing to take GCSE’s (an invigilator at her bedside). She got four B-plusses (we’re so proud). Now, with life ‘on hold’, we’re hoping this essential operation will regain a decent level of function.
Ylena urgently needs your support! Please donate what you can, fund-raise and share Ylena’s story on social media.